Aa
What it took for a diagnosis of MS
I am a 55 year old, white female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever sufferd. Remember I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!
Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.
The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild. Later I discovered in his notes that he thought I was faking the weakness.
During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks. One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I had a couple weeks of a weird sensation of warm water running down my right thigh.
I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...
Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months. Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house.
My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.
It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.
I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine.
He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications.
Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.
The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!
Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough. They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.
In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.
So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. Ya know, the vertigo had been quite enough....
I'm now two weeks into therapy with Avonex. I'm in a new relapse (my fourth in the 30 months) and just had another MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet. I'm having constant electric shocks down my left leg when I flex my neck. Dozens of times a day. It's called L'Hermitte's Sign, and it is common in MS, but new to me. It is felt to indicate upper spine lesion that presses on normal nerves when the neck is flexed.
so I, too, am a Stanger in a Strange Land. I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.
Quix
Any comments? Later I'll try to list some of the things I've learned from all this. Quix
Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.
The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild. Later I discovered in his notes that he thought I was faking the weakness.
During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks. One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I had a couple weeks of a weird sensation of warm water running down my right thigh.
I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...
Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months. Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house.
My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.
It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.
I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine.
He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications.
Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.
The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!
Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough. They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.
In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.
So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. Ya know, the vertigo had been quite enough....
I'm now two weeks into therapy with Avonex. I'm in a new relapse (my fourth in the 30 months) and just had another MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet. I'm having constant electric shocks down my left leg when I flex my neck. Dozens of times a day. It's called L'Hermitte's Sign, and it is common in MS, but new to me. It is felt to indicate upper spine lesion that presses on normal nerves when the neck is flexed.
so I, too, am a Stanger in a Strange Land. I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.
Quix
Any comments? Later I'll try to list some of the things I've learned from all this. Quix
i have been going through so much since i had brain surgery in july 09 i had surgery for Arnold Chairi I malformation. them became paralyzed on my right side. numbness and tingling and itching all over i am in pain all of the time. they have tested me for ms and everything was clean. now going for more mri's on the 20th of decmber and then another spnal tap this will be number 6!! im soo tired and depressed i really need to talk to people who are going through the same thing.please help!!!! my name is Tina B i am 38 and i feel like im going crazy and i feel that the doctors think im making it all up.......
Im a 36 yr old mom of three. A 18 yr old senior in HS, an 11 yr old w/ Autism, and a 5 yr old. I live a very intensely stressful day to day life.
I am pissed off, frustrated, concerned, and am at a dead end in the way of trying to get a definite diagnosis.
Summer 1999~ son got dx'd w/ Autism and I fell apart emontionally and physically. Started to have headaches and tingling in ends of fingers, went to Neuro, MRI showed no lesions, told me I had a nervous breakdown over my son
Summer 2001~went a different Neuro due to headaches and legs feeling heavy, ordered MRI, no lesions again. SHe gave me Neurontin for the headaches and sent me on my way
July 2007~Headaches (again) Tingling in right foot, charley horse in right leg, muscle spasm on lower back and top of left arm feels desentitized (but not numb)
Go to headache clinic and they say I have Acute Migraine syndrome. Ordered a MRI in early Sept (brain, no spine this time), came back normal.
Sept 2007~Then the weird feeling in my left arm goes all they way up it and wraps around my back and down my other arm, my hands start to tingle and then I got extreme pain (neuropathy type burning) in my hands for three days, the only thing that would relieve the pain was soaking them in HOT water, hands and arms also feel very weak during this 3 day span. I also have muscle twiches during all of this.
Mid Sept 07~ go to Rhummy doc to see if it could be something autoimmune related, stillhavent gotten test results (took 8 tubes of blood) He tells me that I have Fibromyalgia
Went another Neuro a week later and he tells me that I dont have MS and that I need to see a psychiatrist, he also said Fibromyalgia.
How can it be Fibro w/ all of these neurological symptoms. I do have muscle pain but the neuro symptoms clearly out way them
Currently all of the symptoms have disappered exceptright foot still doesnt seem like its attached (no tingling or numbess) but fatigue and arm/leg muscle strength is still not where it was before. Ive been completely freaked out, on the internet constantly since all the symptoms started (3 mos ago), lost 25 lbs due to worrying myself to death over the uncertainty of my health. Like I said Im am at a dead end, with no diagnosis and no where to turn. My symptoms clear spell MS but I fear that by the time I get a definte diagnosis I will have permant disability, which could have been avoided w/ early intention of immunosuppreive drugs. PLease help, desperate for suggestions.
MissouriGirl
I am pissed off, frustrated, concerned, and am at a dead end in the way of trying to get a definite diagnosis.
Summer 1999~ son got dx'd w/ Autism and I fell apart emontionally and physically. Started to have headaches and tingling in ends of fingers, went to Neuro, MRI showed no lesions, told me I had a nervous breakdown over my son
Summer 2001~went a different Neuro due to headaches and legs feeling heavy, ordered MRI, no lesions again. SHe gave me Neurontin for the headaches and sent me on my way
July 2007~Headaches (again) Tingling in right foot, charley horse in right leg, muscle spasm on lower back and top of left arm feels desentitized (but not numb)
Go to headache clinic and they say I have Acute Migraine syndrome. Ordered a MRI in early Sept (brain, no spine this time), came back normal.
Sept 2007~Then the weird feeling in my left arm goes all they way up it and wraps around my back and down my other arm, my hands start to tingle and then I got extreme pain (neuropathy type burning) in my hands for three days, the only thing that would relieve the pain was soaking them in HOT water, hands and arms also feel very weak during this 3 day span. I also have muscle twiches during all of this.
Mid Sept 07~ go to Rhummy doc to see if it could be something autoimmune related, stillhavent gotten test results (took 8 tubes of blood) He tells me that I have Fibromyalgia
Went another Neuro a week later and he tells me that I dont have MS and that I need to see a psychiatrist, he also said Fibromyalgia.
How can it be Fibro w/ all of these neurological symptoms. I do have muscle pain but the neuro symptoms clearly out way them
Currently all of the symptoms have disappered exceptright foot still doesnt seem like its attached (no tingling or numbess) but fatigue and arm/leg muscle strength is still not where it was before. Ive been completely freaked out, on the internet constantly since all the symptoms started (3 mos ago), lost 25 lbs due to worrying myself to death over the uncertainty of my health. Like I said Im am at a dead end, with no diagnosis and no where to turn. My symptoms clear spell MS but I fear that by the time I get a definte diagnosis I will have permant disability, which could have been avoided w/ early intention of immunosuppreive drugs. PLease help, desperate for suggestions.
MissouriGirl
If there is anyone else that has posted their timeline story in a different place - can you add it to this thread so that everybody can read all the timelines of people that have been diagnosed with MS in one place?
These are Quix's words:
"........For anyone with an MS diagnosis, there's a bunch now that need to be added to this thread. If you already wrote one up and posted it, please copy and paste to here. Thanks"..................
SLlowe
Carol (Hey, Hotlegs, where's your story? Find it and get it here with the rest of us!....please)
Siddy - DONE
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805
These are Quix's words:
"........For anyone with an MS diagnosis, there's a bunch now that need to be added to this thread. If you already wrote one up and posted it, please copy and paste to here. Thanks"..................
SLlowe
Carol (Hey, Hotlegs, where's your story? Find it and get it here with the rest of us!....please)
Siddy - DONE
Burban-chick
Karina (karzme)
Angela
Kitten O
MedicGirl
JazzyFizzle
Savagek (Rob, if he will still have us)
Risnerrose (Sherry)
Karina2805
Symptom Timeline
1997 Spring
- Parvo B19 during first month of third pregnancy
1997 Summer
- eye exam, blurred "spot" in lower peripheral vision, notice it when reading in bright light, esp. if paper is shiny, white (remains to present)
1997 throughout pregnancy
- hands fall asleep, acid reflux, drop in blood pressure, tachycardia, fatigue
1998 January 16
- birth of third child
1998 October
- gallbladder removed (severe dizziness for two weeks following, eyes felt like they were jerking from side to side)
1999 Spring
- sudden blurring of vision (severe for about 15 minutes, blurred for hours)
2001 Spring
- woke with "crick" in neck, extreme shoulder pain followed
2004 Winter
- hypertension (began medication)
2004 Spring
- hypothyroidism (began medication)
2004 Fall
- shoulder surgery for hooked acromion, immediate relief of pain
2005 Spring
- shoulder pain returns, but not as severe as before
2006 January
- foot pain, toes seem numb, finger pain
- referred to rheumatologists (all tests were negative, except Parvo B19 and B12 was in the low normal range)
- began taking B12 suppliments
2006 Spring
- knot behind left knee, limping (lasted for four weeks)
- blurred vision (have had periods of blurred vision off and on for quite some time)
- tingling sensation in feet and face (face and scalp continue to tingle)
- sensation of wearing a tight knee-high sock on right leg (continuous for two months, reoccurs on occasion)
- had an episode of sudden "weakness" of right leg and right arm, managed to get to sofa, hand was flopping like a rag doll (lasted 5 minutes, muscles fatigued for the day)
- GP suspects MS: ordered MRI (with and without contrast) and referred to neurologists
2006 Summer
- severe squeezing around rib cage (lasted 15 minutes, sore afterwards)
2006 August
- neurologist appointment: most symptoms were gone at this point, except tingling in face and scalp; fatigue is awful
- reflexes were fine
- MRI was clear (found out a year later this was an error)
- diagnosed with idiopathic peripheral neuropathy
2006 Fall
-increased synthroid (I thought this was the problem, felt better for a while)
2007 January
- symptoms return
- thyroid levels fine
- GFR slightly low
- blood pressure inconsistant
- vision blurs and clears
2007 May
- had a second episode of sudden "weakness" of righ leg and right arm (lasted for several minutes, muscle fatigue afterwards)
- 2 or 3 mild episodes followed over the next few days
2007 June
- at church camp (I was stressed, fatigued, and over-heated), I had another episode while walking; I was unable to move my leg or hold anything
- called doctor's office, receptionist set up appointment with neurologist
- had multiple episodes through the week, one woke me (right leg was rapidly trembling and fingers on right hand were tightly curled in)
- stopped driving
- GP ordered MRI
- instructed me to take an aspirin daily
- MRI (without contrast because of kidneys)
- began to notice cognitive issues: word recall, planning, could not focus, etc.
2007 August
- neurologist said MRI showed several foci indicative of small strokes until he pulled up MRI from 2006
- both MRI's showed several small lesions (unchanged according to neurologist)
- I was unsure how new damage would show up without contrast
- ordered a lumbar punture
2007 Late August
- had LP
- neurologist thinks not MS, possibly migraines, seizures, psychosis
2007 (3 days after LP)
- had an episode similar to above that lasted 10+ hours; chill bumps, nausea, weakness, etc.
- arm continues to "spaz" and is accompanied with nausea
2007 September
- IgG elevated, need to start meds
- seeking an appointment with UAB Multiple Sclerosis Center
1997 Spring
- Parvo B19 during first month of third pregnancy
1997 Summer
- eye exam, blurred "spot" in lower peripheral vision, notice it when reading in bright light, esp. if paper is shiny, white (remains to present)
1997 throughout pregnancy
- hands fall asleep, acid reflux, drop in blood pressure, tachycardia, fatigue
1998 January 16
- birth of third child
1998 October
- gallbladder removed (severe dizziness for two weeks following, eyes felt like they were jerking from side to side)
1999 Spring
- sudden blurring of vision (severe for about 15 minutes, blurred for hours)
2001 Spring
- woke with "crick" in neck, extreme shoulder pain followed
2004 Winter
- hypertension (began medication)
2004 Spring
- hypothyroidism (began medication)
2004 Fall
- shoulder surgery for hooked acromion, immediate relief of pain
2005 Spring
- shoulder pain returns, but not as severe as before
2006 January
- foot pain, toes seem numb, finger pain
- referred to rheumatologists (all tests were negative, except Parvo B19 and B12 was in the low normal range)
- began taking B12 suppliments
2006 Spring
- knot behind left knee, limping (lasted for four weeks)
- blurred vision (have had periods of blurred vision off and on for quite some time)
- tingling sensation in feet and face (face and scalp continue to tingle)
- sensation of wearing a tight knee-high sock on right leg (continuous for two months, reoccurs on occasion)
- had an episode of sudden "weakness" of right leg and right arm, managed to get to sofa, hand was flopping like a rag doll (lasted 5 minutes, muscles fatigued for the day)
- GP suspects MS: ordered MRI (with and without contrast) and referred to neurologists
2006 Summer
- severe squeezing around rib cage (lasted 15 minutes, sore afterwards)
2006 August
- neurologist appointment: most symptoms were gone at this point, except tingling in face and scalp; fatigue is awful
- reflexes were fine
- MRI was clear (found out a year later this was an error)
- diagnosed with idiopathic peripheral neuropathy
2006 Fall
-increased synthroid (I thought this was the problem, felt better for a while)
2007 January
- symptoms return
- thyroid levels fine
- GFR slightly low
- blood pressure inconsistant
- vision blurs and clears
2007 May
- had a second episode of sudden "weakness" of righ leg and right arm (lasted for several minutes, muscle fatigue afterwards)
- 2 or 3 mild episodes followed over the next few days
2007 June
- at church camp (I was stressed, fatigued, and over-heated), I had another episode while walking; I was unable to move my leg or hold anything
- called doctor's office, receptionist set up appointment with neurologist
- had multiple episodes through the week, one woke me (right leg was rapidly trembling and fingers on right hand were tightly curled in)
- stopped driving
- GP ordered MRI
- instructed me to take an aspirin daily
- MRI (without contrast because of kidneys)
- began to notice cognitive issues: word recall, planning, could not focus, etc.
2007 August
- neurologist said MRI showed several foci indicative of small strokes until he pulled up MRI from 2006
- both MRI's showed several small lesions (unchanged according to neurologist)
- I was unsure how new damage would show up without contrast
- ordered a lumbar punture
2007 Late August
- had LP
- neurologist thinks not MS, possibly migraines, seizures, psychosis
2007 (3 days after LP)
- had an episode similar to above that lasted 10+ hours; chill bumps, nausea, weakness, etc.
- arm continues to "spaz" and is accompanied with nausea
2007 September
- IgG elevated, need to start meds
- seeking an appointment with UAB Multiple Sclerosis Center
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